By Simon Stones
“This year marks twelve years since I received my diagnosis, and it is true that time is a great healer.”
Life has a funny way of teaching us many things. It presents us with a number of challenges along the uphill journey, though some people get more than their fair share. As a child, it’s sometimes difficult to understand why you’ve been so unlucky. “What have I done to deserve this?” Having lived with juvenile arthritis from the age of three, I had grown up knowing nothing else but hospitals, treatment and pain – making me feel different than everyone else.
At the age of 12, I began to develop some new bowel-related symptoms, which were largely ignored or overlooked. My mum fought over twelve months to get me referred to a paediatric gastroenterologist, since she knew there was something seriously wrong. I was dealing with excruciating abdominal pain, the embarrassment of having to run out of class to go to the bathroom, and I had a genuine fear of having to use the public toilets in school. Despite the in-depth description of symptoms to my local doctor and hospital specialists, I was repeatedly told that the only thing wrong with me was constipation. Instead of further investigations, I was prescribed laxatives, which only made matters worse.
My mum had repeatedly asked for a colonoscopy and gastroscopy to be done to rule anything out, to little avail. Mum had diverticulitis, a condition characterised by infection or inflammation of pouches that can form in your intestines. Since some of the symptoms were similar, we began to wonder whether I had the same condition. I had been more or less guaranteed that it wouldn’t be Crohn’s disease or ulcerative colitis, since I wasn’t a typical patient – what even is one of those!?
After many more months of fighting for an answer, I finally saw a paediatric gastroenterologist who decided to investigate using a colonoscopy and gastroscopy. Again, he seemed quite certain that it wasn’t ulcerative colitis or Crohn’s disease, given that my weight had been fairly stable, and my inflammatory markers hadn’t changed significantly, bearing in mind they were already elevated – but that was put down to the arthritis. I don’t think the healthcare professionals meant to make me feel this way, but I had begun to question whether it was all in my head. Nobody seemed to believe what I was experiencing, except my mum and dad, which is really hard to deal with. It certainly dented my confidence.
The day for the camera investigations arrived. It was Monday 21st April 2008. I hadn’t packed a bag as the plan was a day case admission for the camera investigations under general anaesthetic. For me, the worst part of the colonoscopy was definitely the bowel preparation you have to take – I feel nauseous just thinking about it! I still struggle getting the stuff down now for follow-up colonoscopies! So, I walked down to theatre, the anaesthetic was injected into my veins and I quickly drifted off. The earliest memories I have after the camera investigations was feeling incredibly sore (presumably where the biopsies had been taken), and I was lay in bed in a side room, with my parents by my side. Very shortly after, I remember the consultant coming into the room, before sitting on the side of the bed.
You know there’s bad news when somebody looks at you, tilts their head, and then sits down. “Simon, I’m so very sorry…” Before he had chance to finish his sentence, every worst possible thought came rushing into my head. “I never expected to find what I have found – it took us all by surprise.” He then told me that I had Crohn’s disease, and went onto say that as well severe inflammation and ulceration throughout my intestine, my entire oesophagus and stomach was inflamed and ulcerated too. After further descriptions, he finished by saying, “I’m sorry that we didn’t believe you.” After years of suffering, someone had finally listened to me. Despite the diagnosis, I was so relieved. I wasn’t going mad.
That relief, unfortunately, was short-lived. On the night when I was diagnosed, my parents had left briefly to eat. I was in a side-room, shut off from the rest of the world. All of a sudden, a wave of grief came over me, and I burst out crying. The thought –of having this disease for the rest of my life terrified me. Having read about Crohn’s during my fight for a diagnosis, I had read of so many people requiring surgery and ostomies as a result of Crohn’s disease, and this really did frighten me. Sadly, I didn’t know all what I knew now.
“After years of suffering, someone had finally listened to me.”
Treatment began almost immediately, and I had to stop injecting the biological treatment for my arthritis, since it had been ‘masking’ the Crohn’s disease. My doctor also instructed me to start a polymeric diet, which is a special liquid diet consisting of daily nutrient-packed milkshake-like drinks that I would need to take for eight weeks.
Each bottle was 250 ml, and based on my weight at the time, I was told I would need eight of these a day – that’s two litres of the stuff! This was also on the presumption that I would not eat or drink anything else but water for that period. I managed day one, and then struggled trying to get all of these drinks down. I thought it would be a doddle drinking these ‘chocolate and strawberry-flavoured milkshakes’ – but it wasn’t! It became even more tormenting when I returned to school on this polymeric diet, still feeling ill, and watching everyone else eat and go about their daily lives normally. I wasn’t ready to be back at school – physically and mentally, so I went back home and was home tutored for a couple of months.
As time went by, the polymeric diet did its job, and enabled my digestive system to rest. I tried to observe patterns in foods which seemed to make me worse, but other than green salads, vegetables and spicy foods, I couldn’t identify much else. Over the years, Crohn’s disease has just become another part of my life. After diagnosis, I tried to find out as much information as possible, though I didn’t have the opportunity to meet and chat with other young people living with Crohn’s disease or ulcerative colitis, which was a real shame.
This year marks twelve years since I received my diagnosis, and it is true that time is a great healer. I’ve never forgotten, nor will I ever forget, the pain and trials that I have faced because of Crohn’s disease, alongside my other health problems. However, I have learned to live with my conditions, getting on with what I want to achieve in the way I want to do so. Sometimes, it’s not easy, and there are times when it sometimes feels too much, but you do get there. As life has taught me in many ways, it can be incredibly short, and there are so many others who are worse off than me. So, if I can do something, I will, and I’ll do it with all my heart!
